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Beautiful baby boy forced to live in a plastic bubble!

Bubble Boy: The true and sad story of Sebastian Luis that is forced to live in a plastic bubble!I got a phone call the other day from my friend. He asked me: “What would you do if your little boy is forced to live in a bubble? To see your baby suffering and not be able to hold him whenever you want?”

This is a heart breaking story that i just had to write about.

My friend’s cousin is going through exactly this nightmare. His son is very sick, he is known to be the boy in the plastic bubble. Sebastian Luis, called Sebi is a beautiful boy with gray eyes, amazing smile, and only 10 months old. But unfortunately, he has SCID called also “bubble boy disease”, extremely rare and dramatic condition: he may be forced to live his life in a bubble.

Every day, every hour is for Sebi a fight to survive infections, because he was born with a dead immune system meaning that he has to live in sterile conditions or risks picking up a life-threatening infection.

He will have to go through chemotherapy to destroy what few cells he has left for immune system before the transplant …and after the transplant he will be extremely susceptible to any type of germs. If the transplant goes well he will start develop an immune system in 3 years, but he has to live in the right environment and constant and extreme medical care. Even so, still the chances are uncertain.

If absolutely everything goes well the first 3 years, the immune system will hopefully be functional at the age 12. But until that age, he will have to be protected, he can not come in contact with any germs. Sebi the bubble boy will have to live in a house completely sterile that costs a fortune.

This and the constant medical care is an economical challenge from day to day. The medical costs and other expenses for the bubble boy disease can be counted in the millions. But this is not the worst thing. Imagine how the parents feel the constant fear and uncertainty. They have another boy, 3 years old and he is robbed from his childhood as well.

Here are some lines from the blog the mom is posting on, she wrote her thoughts: “Yesterday I think I said wasn’t the best – My mom
saw him get sick once and I felt bad that she had to see it but she did well and did not cry. Then Enrique (Sebi’s father) saw a coughing fit. I always hope its just me who see it so other people that I love don’t have to see his suffering but it doesn’t always work out that way. I would still say his progress is promising.”

The parents live with hope from day to day. Every day that he does well brings happiness and joy to his family. “Sebastian had a great day today! Less coughing, no throw up AND…..he ate!!!! 3 oz. of Gerber baby food!!! He is definitely responding to his med. The doctor said his lungs/airways sound clear and that the mucus is more in his throat and sinuses.

I really think tomorrow will be a good day too and I am going to enjoy it completely. I’m not even going to think about the near future and what could or could not be until that time comes, I’m just going to embrace every happy moment because right now is all there is and it is wonderful.” said in the beginning of April Sebi’s mother.

Helping Sebi’s family will mean everything to them, So they will be able to support all the costs and purify their home. Sebi’s life depends on it.

SCID became widely known during the 1970′s and 80′s, when the world learned of David Vetter, a boy with X-linked SCID, who lived for 12 years in a plastic, germ-free bubble. In 1975, NASA designed a miniature space suit for then five-year old David, which briefly allowed him to explore the world outside the hospital. After just six excursions, a terrified David refused to wear the suit, afraid the germs in the outside world destroy him.

While I am sure the family appreciates every ones concern and prayers very much, we might all think about giving a donation…no matter how small…to Sebi and his family. This is all beyond my ability to imagine. I’m going to skip going to dinner tonight and give it to little Sebi. I’m praying AND giving. Please help them!

I have a SCID son who was diagnosed @ 3 monts, bmt @ 3 mos. and 10 days. He was isolated for 5 months in the hospital. Chemotherapy was not neccessary. I was the donor. I am expecting a baby who is also carrying the same gene which caused the SCID in my son. The success rate for trtmt is up to 95%. It was in the 70% range when my other son was treated . He is now 11 and rarely gets sick. Takes no IVIG and gets better faster than we do when we are sick. I hope you have explored all your treatment options. I have researched extensively and our hospital has the highest success rate I was able to find. Best Wishes.

my child was born with ada scid and had a bmt on 8th may 2008 she was in isolation in newcastle general hospital but the immune system takes no where near that long to fix this story is so over dramatised. it takes a maxium of 2 years to get corrected and they are in lamiar flow air and are on lots of medicine to prevent infection. this is dramatised yes it is very serious but melody was in isoltaion for a total of 4 months which is a long time. i would have a word with your hospital they are obviously not clued up like duke america and gosh in england. they should be having normal lives by 3 years after not to 12 years

Thank you for the comment and I want to say that Iam happy for your child Melody is good and well,

My team did a research before I puplished this story and, in the research it can go 3 way’s with scid, It can be fine with the child by after 3 years or so and even after 12 years it can be at risk and the child can even die.

But on the other hand let’s just hope that Luis will be well as soon as possible. The thing is that I had to write about Luis story with in mind to inform people about scid and to help Luis familly out in this way.

In my book it is allways dramatised thing when a child life is in a risk.